foot pain and numbness

    • Anonymous
      May 7, 2012 at 3:49 pm

      hey guys… cidp Dx 2005…IvIg evry 4-5 weeks… been doing ok, until recently… the pain and numbness in my feet are driving me crazy… does anybopdy have any suggestions on how to deal with this… besides drugs. i try icy-hot gel under a pair of soft white cotton socks… sometimes helps. sometimes not. anything else to try?? steven

    • GH
      May 7, 2012 at 7:56 pm

      My feet still hurt a year and a half out of the hospital. I’m hoping they will improve n the long run, but it’s impossible to know. They are worst when I am on my feet for an extended time, so I just sit down from time to time and put my feet up when I can. I don’t take any medication for it. Sometimes I just soak them in the bathtub for awhile. I’m used to it so ignore it except when it’s worst, but of course I have no way to compare my pain to that of others.

    • Anonymous
      May 7, 2012 at 9:20 pm

      My heuro from Duke suggested Capsaisen. It was applied directly to the plantar fascia area. It didn’t help me, but he says it can help some. The only downside is a really hot foot. I completely sympathize with you on the foot thing. I sometimes feel like I would chop the SOB’s off they hurt so much.

      Take care
      Dick S

      • December 26, 2014 at 9:18 pm

        It has been 9 years now since I got GBS. Pain in my feet is my worst problem at the present time. After I am on my feet for 5 or 6 hours I need to sit down and rest my feet. It is very annoying when I have a lot to get done. I mow the grass with an old Gravely Tractor and my feet really hurt bad at times. Sometimes if I keep on going in spite of the pain it subsides. I don’t take any medication because I hate pills nor do I ever go to the doctor. I will be 74 on my next birthday. Anyhow when you have a big rural property you have to maintain it. Fortunately my feet don’t bother me when I am sitting down. I think what it is is residual nerve damage left over from the GBS but I can’t be sure. It helps to use oversized shoes and wear thick socks plus inserts. GBS is really horrible when you first get it but with the passing of years the memory of your bad experience tends to recede. I don’t think about it too often.

    • GH
      December 26, 2014 at 10:21 pm

      Almost four years out, my feet still hurt. It’s not too bad, though, so I just live with it without taking anything for it.

    • February 11, 2015 at 1:32 pm

      I have foot pain similar to diabetic neuropathy. It feels like fire ants biting my feet and ankles while other parts of my body itch intensely. I have tried various remedies but find that Neurotin is the only thing that works for me. It does not affect me in a negative way and it does not sedate me like pain medication. I take it twice a day with 300 mg at night and 100 mg in the morning. I know you do not want to rely on medication but I have found that this is the only thing that really helped me.

    • April 6, 2015 at 8:42 am

      9 years out and getting worse. Right this moment, my feet feel like there is a rubber band, 1.5″ wide, over each foot, starting at the base of the toes. If you would have such a rubber band, you would not be able to feel the texture of the floor.

      The pain has several features. Right now, my feet feel very cold. I cannot do anything to relieve that, including warm socks, blankets, water, heating pad, or massage. When these materials are touching my feet, I feel less pain, but only because of distraction. The instant I take my feet away from the source of the warmth, I go right back to the original, cold feeling. I think many of us need to be careful about how he describe our pain to others. In reality, my feet are not cold, they just feel something like being cold. The cold analogy is a way of explaining some feeling that is unique, that I have never experienced in the past, to someone who has also never experienced this. No matter how “cold” I describe my feet as being, when I or anyone else touches them, they feel like they are the same temperature as any other part of my body.

      Another type of pain is the sensation that I am wearing socks and walking on gravel. These sensation is present even if I am at rest, to a degree. But when I stand or walk, it is torture. I list when I walk, as if I am trying to steer my body away from the sharp objects that I feel that I am walking on.

      There is also a very general feeling of standing in a wading pool with a mild electrical charge pulsing through my legs. This is sort of like that creepy crawlie funny bone sensation that has no precise location. It is below my knees, but cannot be more specific. Here is a weird way to explain it: this sense of pervasive discomfort feels as if it is happening not just to my legs, but to an area around my legs. It is as if there is a bubble of pain that begins 30 inches around my legs.

      So far, what I have described is always symmetrical. I also have a pain that feels as if someone takes a pair of pliers or channel locks and squeezes one of my toes. There is no relief for this. Rest, massage, nothing changes this. Another feature is that it moves. It is the third toe of my right foot at this moment, but was the big toe earlier this morning. It is usually on the right foot, but does happen less frequently on the left foot.

      I’ve tried two neuro docs lately who have done a nerve conduction study. They both conclude that IVIG is not called for.

      I have tried a number of things. The best relief is from opiates. I’ve been taking these for 9 years, and, of course, I have developed a tolerance. I also take amitriptyline and sertraline. The effectiveness of Gabapentin and Lyrica was not that great, and the side effects were zombie-like. I don’t take these anymore. All of my meds are managed by my primary doc, who consults with the neurology and pharmacology departments in my hospital, a large, university type. I see the Mayo Clinic sometimes, but recently they told me there was nothing more that they can do.

      I’m a university professor and still teach full time, by choice. I have talked to the administration about disability or reduced hours. The financial aspect looks pretty good, but I am going to hang on until the screaming end.

    • April 6, 2015 at 7:57 pm

      I too have experienced some of what you describe. Sometimes this is due, at least in part, to iron deficiency. My Doc put me on Ropinirole (Requip) and that didn’t help enough. What I found that helps me is an over-the-counter tablet from Magnilife that I dissolve under my tongue. It works for me usually within 20 minutes. More info here:

      Many drug stores carry it, but I buy it on-line in bulk because I may take 1-3 in succession when the feelings are present, sometimes the RLS or toe sensations wake me up at night, so I keep a bottle next to my bed. It allows me to go back to sleep.

      Hope it might help you and others that are ‘blessed’ with our lousy disorder.

    • May 19, 2015 at 12:06 pm

      I know exactly what you are going through. My miracle “Drug” isn’t a drug but a supplement: Curcumin turmeric. It is an anti-inflammatory herb. I was using in cooking but I didn’t think I was getting enough so I bought 500mg capsules & take it 2X/day. Wow—what a difference! That’s one thing I do while I also pay strict attention to my diet. Those “Super Foods” do help a lot. Blueberries, dark leafy greens etc. Do your research and talk to your Doc. first!!! There’s lots of info out there about anti-inflammatory foods. Anything that reduces that nerve pain is great! Hope this helps. Mary Kay

    • June 4, 2015 at 7:29 pm

      Do lower back exercises and stretches focused on L-4, L-5. Place ice pack at this location also. Don’t sit for long periods. Swim. Think, spinal nerve roots.

    • July 9, 2015 at 10:15 am

      Sometimes it is incredulous to know other people have the same exact symptoms of ones self. I have just viewed these posts (some from long ago) and can connect with every single feeling of despair from lack of answers. From the severe restless leg syndrome (which is by far my biggest complaint) to the toe pain of different toes, to all the other abnormalities. Ropinerole I am told by various specialists, is the only drug known to help. I do yoga, swim, and have years of physical therapy. My lack of balance has caused numerous bad falls. I will try the magnalife pill that dissolves and hope ! The anti-depressants sometimes given together with other meds did zilch. Any other ideas ?
      GBS 1996,paralysis,ventilator, months in hospital and rehab

    • GH
      July 13, 2015 at 5:49 pm

      The only idea I have is to turn away from despair and try to connect with what is positive. I remember reading an interview with Dr. Stephen Hawking, whi is severely disabled with ALS, and his advice was to concentrate on what you can do rather than what you cannot do.

      Four years out of the hospital, I still have constant foot pain. I now accept it as permanent and just live with it (with no pain meds). I have taken a few falls, so I am just extra careful to avoid them. I am slower than normal, but I can still do a great deal which some others cannot. For that I am thankful. I do not dwell on what I have lost.